Kia ora koutou,

It’s great to be with you for World Down Syndrome Day. Today we celebrate the lives and valuable contributions of people with Down syndrome.

Alongside, we must also acknowledge the significant concerns within our disability community regarding the recent changes to funding. These changes have caused considerable distress and add to existing pressures.

In this context, the Enabling Good Lives (EGL) approach offers a clear and positive direction forward. EGL is a movement driven by disabled people and their whānau, advocating for a more inclusive Aotearoa with a support system that truly meets their needs by providing genuine choice and control.

At its heart, EGL is guided by the principle of “nothing about us without us”. This means that decisions about disabled person’s life should be made by them, not for them. 

It’s about building a system that focuses on individual strengths and aspirations, rather than impairments.

Crucially, EGL provides a framework to address the significant unmet needs in our community. The 2023 Household Disability Survey revealed that a substantial 62 percent of disabled people – over half a million individuals – reported lacking necessary support, accommodations, medical care, or equipment. This clearly indicates a major gap in the current system. EGL directly tackles these issues by emphasizing flexible, portable funding, access to independent allies, and the strengthening of community connections. These elements aim to provide the right support, at the right time, tailored to individual needs.

The “Abuse in Care report” highlighted EGL as a desirable model for the future, recognising its potential to create a more responsive and empowering system of support.

On this World Down Syndrome Day, let us embrace Enabling Good Lives as the clear pathway to positive change. It is a framework developed by and for the community, with the fundamental goal of ensuring all disabled people, including those with Down syndrome, can live full and meaningful lives with the support and respect they deserve.

Before I hand over to my colleague , I encourage you to:

• Learn more about the principles of EGL.
• Connect with disability advocacy groups actively working towards EGL implementation.
• Contact your local MP to advocate for a disability support system aligned with EGL principles.

Let’s work together to move beyond the current challenges and build a future where the unmet needs of disabled people are effectively addressed through the empowering and community-led framework of Enabling Good Lives